I interviewed Marie from ASFC (Association française du Syndrome de Fatigue Chronique) about what it's like for people in France with ME with thanks to Katharine Cheston and Juli Persson for translating/co-ordinating.

​How did you get ill?

Very suddenly, following a viral infection (glandular fever)

How were you diagnosed?

I was diagnosed in an Internal Medicine Department (hospital department in France and overseas dealing with the diagnosis and treatment of systemic, often complex, diseases).

How does this disease affect you?

I suffer from intense exhaustion, post-exertional malaise, severe cognitive impairments, an imbalance of gut microflora, dysfunction of the immune system leading to frequent viral infections. This means that I often have to stop working.

Do you know of any support groups or associations in France for those suffering from ME/CFS? What are their aims?

There is the ASFC (Association française du Syndrome de Fatigue Chronique), that works in collaboration with a Scientific Board, aims to welcome, inform, and support those suffering from ME/CFS, and to direct them to hospitals with a special interest in the illness. They also support a French research programme, which the Scientific Board is currently finalising, alongside working on developing a programme of therapeutic education and participating in studies on chronic conditions (such as providing data for epidemiological research).

There is also another support group, SFC-EM.com, which also has a Facebook page, and offers its members additional information about the illness.

Are there doctors who would be interested in the research into ME/CFS and the recent scientific advances?

Yes, there are researchers working on ME/CFS in France, and two members of ASFC’s Scientific Board are on the Management Committee for the European programme of research into ME/CFS, EUROMENE.

Do you have an idea of the amount of people who suffer from this disease in France?

Around 150,000 people suffer from ME/CFS in France.

How do doctors and government officials perceive ME/CFS in France?

ME/CFS is not currently recognised by the Department of Health in France, and the illness is poorly understood by medical professionals, especially by general practitioners, who are often the first point of call in cases of persistent fatigue. ME/CFS patients are therefore under-diagnosed in France, and their disability is not recognised.

How difficult is it to get a diagnosis of ME/CFS?

It can sometimes take many years, due to the lack of medical education on this disease.

What treatment is currently prescribed to those suffering?

There is no curative treatment currently available, but general management can improve certain symptoms. Each patient reacts very differently to the same management techniques, so each individual has to take an active role in their treatment and experiment in order to find something that might help to relieve some of their symptoms.

Are there any specialist clinics for ME/CFS patients in France?

There are five hospital centres in France that can make a diagnosis of ME/CFS: Lille, Marseille, Nancy, Angers, and Lyon.

Do patients receive adequate support? Can they receive disability benefits when they are unable to work?

Support for ME/CFS patients in France is still very uncertain and often very difficult to obtain. Despite suffering very severely patients often find that their disability is not recognised, and this adds to their suffering.

Are patients and doctors aware of the Rituximab trial, which is currently taking place in Norway?

Yes, and this treatment is offered in some very specific cases, such as for those suffering an associated auto-immune disease, such as Sjögren’s syndrome.

And what about the controversy surrounding the PACE Trial in the UK?

Yes, the controversy around CBT and Graded Exercise Therapy is well-known, as unfortunately these therapies are damaging to ME/CFS patients worldwide. This can lead to some patients becoming very mistrustful of doctors.

What changes would you like to see to the treatments currently proposed in France?

I would like to see improvements to medical education, more funds for biomedical research, and genuine recognition of this disease.

What does the future look like for ME/CFS patients in France? Is there reason to be positive? What could be done?

There is a lot left to do, but it is encouraging to see that some doctors really seem determined to improve things. However, there needs to be many more doctors like this, and they need the means and the support from the government. It is incredibly important that institutions recognise this disease, and the disability it causes, in order to reduce the medical neglect and mistreatment that has such a devastating impact on society.